24 Days Post-Op and We're Going Home Tomorrow

Well, here we are… Pushing a month in the hospital and I really can’t believe we’re in this boat again. I didn’t foresee the Fontan recovery being this difficult. Yesterday a doctor came in that worked with us after Jack’s Glenn and she looked at us with sad eyes and said, “Y’all just can’t have an easy time, can you?” I guess not. 

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We made it home last Wednesday afternoon knowing that our chances of landing back in the CCU were pretty high, which was scary to me. I HATE the hospital life and being separated from H but I would rather know that Jack is completely well before we bring him home. But nevertheless, they let us go home with the promise that IF the fluid builds back up it will be over a longer period of time (days, not hours) and they will check him again on Friday. Friday morning we saw the cardiologist at the clinic and he said that the fluid was still there but that Jack was managing well and that it didn’t seem to be building, just resting. He also looked at the growing infection around Jack’s incision and started him on Keflex. We made an appointment to come back Monday at 11 to check everything again. 

The weekend was WONDERFUL. Jack played and laughed and rolled in the floor with Harrison and it wasn’t as scary to have him at home as I thought it would be. He was already two full weeks post-op and he felt great. He played outside with his friends and LOVED being home. Sunday night he went to bed feeling fine. No complaints. He woke up though crying that his incision (infected area) was hurting. I gave him some Mortin and he went back to sleep. Around 1:00 he woke up screaming and couldn’t go back to sleep. I was really worried so I decided to just go ahead and take him in to the ER. I knew that we had an appointment in the clinic at 11 but I didn’t want to wait if something more serious was going on. So me and Jack headed back to Children’s. They did some blood work and after a few hours the doctor came in and told us we were being re-admitted to treat the infection and before we knew it we were back in the CCU with all of our old friends (nurses). 

Two days ago Jack had a little minor procedure where Dr. Dabal went in and cleaned out the infected area of Jack’s incision and took cultures so that he could tell exactly what kind of infection it is so that they can know for sure that they’re treating it with the right antibiotics. Now Jack has a hole in his chest. I won’t venture to guess the size but I’m pretty sure you could fit half of a golf ball down in there. They’re packing it with gauze daily and bandaging it up and the goal is for it to close up from the bottom up, so that it will heal completely and not just close at the skin over the top of a hole. SO for now, big hole, big bandage. Uck. 

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Dr. Dabal told us the day we got re-admitted that even if Jack didn’t have the infection we would have likely been re-admitted anyway during our clinic visit because of that pesky fluid. So while Jack was getting IV antibiotics to treat the infection anyway they were just going to go ahead and get him back on some IV diuretics to hit that fluid hard too. They went ahead and told us on Wednesday that after two days of the maximum dose of IV diuretics Jack’s fluid was being so persistent that they thought that he was going to need the pigtail tube to drain it so they were going to go ahead and plan for it Thursday morning and they would place the tube and clean out the incision at the same time. 

I had gone home to spend the night with H Wednesday night and was coming back early Thursday morning to be with Jack before the procedure. I had brought Harrison with me because I knew seeing him would lift Jack’s spirits before he had to go back for the procedure. As I was pulling into the parking deck my phone started ringing. It was Josh. He told me that he had good news. ALL of the fluid was gone. All of it. 

Thats. Not. Possible. 

They had maxed Jack out on IV diuretics for DAYS and the fluid hadn’t moved. They were 100% sure that it wasn’t going to move at all. Not even a little. Hence the need for the tube. So for them to pull up an x-ray and say that its GONE was unbelievable. The cardiologist told us that there was a big simultaneous gasp when the x-ray came up because everyone in the room was shocked. 

That’s just God. 100%. 

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So they went ahead and planned for the procedure where they would clean out the infection but didn’t have to place the tube. Thank you Lord. We went down with Jack and talked to him until we had to leave so they could sedate him. I could hear him crying MOMMMMYYY until the door to the CI closed behind me. Ugh. Worst feeling ever. But they gave him the sedation drugs very quickly after that and he zoned out. He was awake the whole time but completely out of it. We got to go back and see him after and it probably only took 10 minutes. Dr. Dabal said it went great and there wasn’t really any infection in there. He said there were white blood cells which indicates that he was fighting an infection but no bacteria so that’s good news. They sent cultures to make sure but he felt confident that nothing would grow there. He explained the hole and the packing and re-growing process. 

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Jack was so funny coming off of that sedation. At first it was kind of scary because his eyes were open but wouldn’t fix on anything and when he would try to follow my voice and look at me his eyes would jump really fast like 100 times. I didn’t like it. It passed pretty quickly though and then all of a sudden he looked over and said “I love you Mommy.” Then he started talking silly. I said, “do you feel good?” He said, “Yea. YEA! YEAAAA!!!” lol Then he started asking for Harrison a THOUSAND times and screaming his name. His nurse just giggled at him. It wasn’t long after that when he came back to his normal self and we got to head back up to our room in the CCU. 

Since then we’ve just been hanging out. Jack has been on isolation until the cultures come back. So, he can’t leave the room which is HORRIBLE for our little go-er and do-er. He’s been driving us and his nurse friends crazy wanting out. But he’s 100% his wild and silly self and ready to get back home again soon. 

Today they took him off of all IV drugs and switched everything over to PO. They went ahead and got him a prescription for his antibiotic filled so we don’t have to wait around on it forever when we get discharged tomorrow. (Oh! Did I forget to mention we are GOING HOME TOMORRW??) Once we’re home plan will be the same as it was before. Frequent visits to the clinic for x-rays and echoes to check for fluid probably for a long time. But frequent visits to the clinic from HOME are better than daily x-rays at 5am in the hospital. So yay for going home tomorrow!! They taught Josh how to pack and dress his wound since, let’s face it, Mommy cries at the very sight of it from a distance and Daddy is tough and brave. Josh will change it twice a day for a few days and then change to once a day. Dr. Dabal seems to think it will close up in a few days. I sure hope he’s right about that. The sooner the better! As for the fluid, let’s just pray we’ve seen the last of it!  

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I’m tired y’all. And this last week almost broke me. I came into the Fontan feeling so brave and so ready to put this chapter of our lives (the waiting for the Fontan chapter) behind us. I was scared but I was also confident that it would be different and we wouldn’t have complications and set-backs. We had our fair share of complications after the Glenn and this time would be easy. Boy was I wrong!Thankfully, the issues we’ve had this time around still don’t compare to the recovery from the Glenn. Mostly because the complications we have experienced this time have been somewhat expected and completely manageable. After the Glenn Jack was so sick the whole time and the doctors weren’t sure how to fix him or even if they could. This time he has felt good for the most part and they have been able to get ahead of the problems the whole time so it hasn’t felt as scary or overwhelming. 

However, there are moments in this hospital life that my mind and my heart aren’t on the same page. In my mind, I know that Jack is doing well and the infection and the fluid are manageable and treatable and simply setbacks that will keep us here longer but not dangerous or life-threatening. BUT in my heart, I’ve been terrified. Watching my baby go through all of this day in and day out. Connected to machines, cut open, screaming in pain, writhing from withdrawals, needles poking him, people holding him down, on and on… It’s just too much sometimes. It seems so unfair. When my friends all post pictures of their sweet kids playing at the park or swimming in the pool. I can’t help but question why this has to be the life that was chosen for Jack. It’s hard and it’s scary and its unfair. And I want to scream or break things or do anything that will make all of this stop. But it doesn’t stop. It can’t. Because the reality is that this is the life we were given. Hand chosen for us by the Creator of the universe. And I don’t know why. I don’t know why my beautiful, happy, full-of-life little boy had to be the one to carry this burden. But I know that he carries it with a heck of a lot more grace than I do. And I’m sure he always will because this is the only version of life that he will ever know. 

But as we walk through the hallways of this hospital filled with sick children and scared parents, life really falls into perspective. We will walk out of here soon. We will go home and eventually resume the life that we know. Jack will play in the yard and he will grow and we will have years of life and love and laughter with him ahead before we have to face the next step in this journey.Even though I would give anything to trade this life for a perfectly healthy one for Jack, I can be thankful for the good things. We are GOING HOME. Jack is RECOVERING. God is GOOD. 

I watched a video this morning that reminded me that even before I was born God had called me to be the mother of a child with heart disease. Every moment of my life I was being prepared for this journey. Even in the toughest days of my life before Jack was born, when I was facing battles that felt so difficult and that I didn’t understand, God was pruning me and preparing me for the even more difficult days ahead. And God’s strength fills every single crevice of my weakness. He lifts me in those dark moments. He reminds me to turn my eyes to Him because He knows that He is the only place where my heart will find true peace. He calms my raging seas. Every single time. And let me tell you, my seas, they can REALLY RAGE. The hurt and the anger and the bitterness can rear their ugly heads in my heart and I can go from zero to one hundred in one second flat for no specific reason and He’s right there to talk me back down and remind me that everything is going to be ok. Every single time. 

I am so thankful for God’s grace. Though all of this God has continuously poured his grace over me and Josh and our family. We all struggled with the idea that the Fontan was coming. The idea of handing him over felt impossible. But we knew it had to be done. Jack couldn’t live without it. So we prayed and waited. (and I cried. a lot.) And after four years or waiting and dreading and fearing that day, I can’t believe that it was TWENTY-FOUR days ago! It’s OVER. Done. In the past. There are moments when I seriously can't even wrap my brain around that. This has owned and defined our lives and now its done. Thank God. Literally. 

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The Fontan is not the end of our journey. It was a palliative, not curative procedure. It put a really GREAT band-aid on Jack’s heart issue that will last a really long time. And for now we are thankful. We are looking forward to YEARS of peace and good health. As for the future, we are believing that it will be many years before we have to worry about the “next step.” 

Post-Op Days 6, 7, and 8

It’s been a few days since I’ve updated so I’ll try to just hit the highlights…

Post-Op Day 6 and 7

The past couple of days have been really good days for Jack! He’s been getting up moving around and walking more than ever. We’ve been to the play room about 50 times. He loves the big window and the block table and the fact that they’re all the way at the other end of the hall from us just means he has farther to walk and that’s good! 

They ran some tests on day 6 to check for chylothorax and he was negative. Yay! They also did an ultrasound of Jack’s throat area to check for blood clots and he didn’t have any. Another yay! The drainage has just been really persistent and and negative test results mean that the new blood flow is just causing Jack’s body to have a harder time adjusting than most other kids do. Now we just wait for it to slow down. 

On day 7 Jack got one tube out! Yay! The left side has been draining a lot less than the right side. The nurse practitioner came by yesterday morning and he told us that the plan is to take the one tube out and keep watching the other one. They’ve bumped him up on the diuretics to try to get rid of some of the fluid. He said that Dr. Dabal created a pathway between the two areas where the fluid sits so that if the fluid on the left does build back up it should be able to seep over to the right side and drain out of the remaining tube. Then once the right side dries up for the most part, they’ll pull that tube. We’ll continue on the diuretics for a while to make sure it doesn’t build back up. We’ll stay in the hospital for 2-3 days after the tube comes out to make sure it doesn’t build back up quickly. Once we go home they’ll monitor us on a weekly basis with chest x-rays and echoes to check for fluid. The hope is that it doesn’t come back. However, its likely that it will. He said that they like to get the kids home and to their own environment where they can move around more freely and eat better because those things will help with the fluid. But if Jack starts showing signs of being tired, breathing trouble, or eating trouble we need to bring him back immediately. He said to always pack a bag for the first couple of months when we come because the likelihood that we will have to stay is high every time. He said if we do end up getting re-admitted they usually will start with diuretics by IV to try to clear it back up and if that doesn’t work there is always a possibility of having to get a tube back in to drain it. However, there is definitely a good possibility that we will go home and not have to be re-admitted so we’re believing and praying for that. And if we do have to be re-admitted then we’ll cross that bridge when we get there! 

We’ve moved to giving all meds by mouth which is not fun. Its usually 3-4 different things every 4 hours with a couple here and there in between. He screams and spits and cries. Not fun. 

Having the second tube out is making a huge difference for him. He is happier and way more mobile. He takes off without us and we have to catch up before he pulls the last tube out! But happy and wild is good. Happy and wild is JACK! 

Post-Op Day 8

I can’t believe its already been over a week! We waited and dreaded this surgery for FOUR YEARS and now here we are. Eight days post-op. Feels amazing to know its behind us for good! And if we hadn’t had to reschedule we would only be post-op day ONE right now so thank goodness for surprise schedule changes! We are about to head down to the arts and crafts party downstairs that Jack has been looking forward to all day! Our fingers are crossed that the third and final tube will come out in the next 2-3 days. That means home in less than a week! 

Here's Jack showing you how he's only got one tube left! :)